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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Wednesday, October 19, 2016

Tabby update: Food Sensitivities test results

These photos were all taken by Tabby, at our Botanical Garden field trip last Friday.  I love how she sees everything that I do but at different angles.

Tabby felt OK enough to go to school this past Monday and Tuesday.  Yay!  She stayed home today though, feeling horrible, and I highly doubt she will go tomorrow. Boo!  She is aching and feverish and has very swollen lymph nodes.  But we're staying positive about that - those are detox symptoms.  We want all that bad junk out of her system.

Yesterday we went to her functional medical doctor for the results from the food sensitivities test that she took.  It was so interesting and encouraging in this journey to figure out what in the world is making her feel horrible most of the time.

It turns out that she has a high sensitivity to many foods she eats almost every day.  Including chicken eggs.  Now how horrible is that considering we now have 64 chickens!  But thankfully she can eat guinea hen eggs, which we have.  And - she can eat duck eggs.  Yay!  Solomon and I have been wanting to get some ducks for awhile.  Is that not a perfect excuse?

Dairy is not good for her either - but that is only COW'S milk and cow's diary products.  Yay for our goats that I milk since she can drink that.  Tabby also likes goat milk cheese.  I need to start making that (in all my spare time, right?).  But even Walmart has one that she likes.  

This sculpture is called "Spring Chicken".  Get it?
 Grains/starches are another problem for her.  Which I found interesting since she didn't test for gluten issues at the scopes she had.  And ginger.  Ginger!  I've always wondered why when I gave her ginger to soothe her stomach it never helped her.

Bursting Heart plant - we have some in our woods too

Here is the list of foods she tested a high sensitivity for:

cow's milk & cows milk products  
chicken eggs
green peas and lima beans

almonds, cashews, sesames, walnuts
barley, bran, gluten, malt, rye, wheat

Isn't that interesting?  I'm going to have to learn how to cook some things differently.  Like no more using coconut oil to cook food she will eat.

The test results came in a very helpful packet which includes more details on foods to exclude, special considerations, shopping lists, and a suggested food rotation list.

Dr. H said it would be best to try and basically follow the paleo diet for Tabby.  Fruits, veggies, meat.  So we'll give it a good try.

This statue is based on a scene from Cold Mountain
 There are still a couple tests we are waiting for results on.  I'm just so grateful to have something to work with.  

I have another mystery child that I need to figure out too.  Solomon.  For a couple years now, he would occasionally wake up in the morning, say his stomach hurt, and then throw up.  This increased in frequency some this summer.  And now, for the past month or so, it has suddenly become very common.  Ugh.  

In the herb garden - Solomon rubbed a plant and then sniffed his fingers to smell it
 I was lactose intolerant as a child, so I've had Solomon off dairy here and there for a few days at a time.  I didn't notice any difference.  Maybe there wasn't a problem but maybe I didn't try long enough.  I'm thinking I ought to try having him go gluten free for a while.  Dr. H said children who are sensitive to gluten can have stomach pain, nausea, and vomiting. 

For the zillionth time - I wanted to be a criminal detective when I grew up.  Not a medical detective!  

Life is full of irony.  

Here are several more of Tabby's pictures:

Sunday, October 16, 2016

Botanical Gardens - Fall field trip

Last spring, we went on a field trip to the Botanical Garden in Chapel Hill, N.C. We went back again last Friday with our field trip group.  My kids (and I!) just love it there. 

Tabby was well enough that morning to go with us - thank you God!  Then that afternoon she became extremely nauseous and has high pain every since - please heal her God.  Still though, she was SO happy to be able to get out for a bit.

[Little update - we got some of Tabby's blood tests back last week.  Everything was normal except her Vitamin D level was a bit low.  That could be contributing to her bone pain and inflammation.  Should get back more lab test results over the next 2 weeks.

The boys LOVE to play in the "twig house".  Unfortunately we learned it is going be taken down this winter.  It is apparently starting to fall apart and some people have gotten hurt.

I saw a beautiful plant that I want for my yard!  The berries on it are gorgeous.  It is appropriately named "American Beauty Berry":

Since we have goats, we thought this one was funny.  Apparently it is a plant that goats hate!  It is called "goat's rue":

We got to go inside this old log cabin.  It was originally built in the 1800s.  It was used by North Carolina playwright, Paul Green, as a place to do his writing.

Lily pads and fish!  Our tour guide showed us how if you push a lily pad under the water, it just pops right back up to the top and all the water runs off.  We needs raincoats made with that material!  This section had raised gardens were they had some sort of garden therapy for people in wheelchairs.

Hunter's favorite plant was the Venus fly traps, which were mixed in with pitcher plants.  We got to watch our guide feed some of the fly traps potato bugs.  Too cool!

Solomon's favorite plant was "Solomon's Seal."  We will plant some in his garden next spring.

Hunter loves a sundial:

For humor, Tabby copied the leaf sculpture called "Running Man".  (She can not wait to start running again herself.)

Hunter was fascinated with this spinning sculpture and was watching it for awhile to figure it out:

We have decided to go back to the Botanical Garden in this winter to see what it is like then.  :)

On a different note, Hunter told me this morning about a funny dream he had.  Right before he had a nightmare about an old lawnmower we have.  (He usually dreams about machines.)  He said he dreamed he was at Lowes looking to buy a pump.  Jesus and the apostles were there, shopping. (LOL!)  And Joseph (Jesus's earthly father) was there too - buying carpentry stuff - but he kept disappearing and reappearing. Hunter said the worst part of the dream was that of all the pumps they were selling, they would not let him buy the one he wanted!

Sunday, October 9, 2016

Hurricane Matthew's gift of firewood

We had A LOT of rain and wind yesterday, courtesy of Hurricane Matthew.  It began in the morning and lasted all day.  The house seemed strangely quiet when it stopped last night.  Our electricity flickered a few times, but were grateful not to lose it because loosing electricity means loosing water for us.  (Our water is delivered from a well via an electric pump.)

Tabby was looking out the window mid-morning and saw an old post oak tree fall and crash to the ground.  Thank God the only thing destroyed by it was a portion of our fencing.  The tree narrowly missed both chicken coops.  If it had fallen the other direction it would have hit our house.

Today the boys and I went out to inspect the tree.  I wonder if the tree was there when this house was built in 1907.  It is huge!

I don't guess home owners insurance covers things like this.  Not sure though.  So Frank drove off this afternoon to borrow a more powerful chainsaw than what he has.  Good thing he has this week off work because this job is going to take awhile.  And we will be well stocked with firewood.  Well stocked indeed.

I kept expecting to see chickens flying through the yard when the wind gusts were extra strong yesterday.  But they pulled through just fine.  Even Mama Mia kept all nine chicks safe and marched them all up to me this morning, wanting their feed.

So thankful we didn't have any more damage.  On extra happy news, Tabby felt well enough to go to church this morning, for the first time in months!

Thursday, October 6, 2016

Tabby Update: It's not Lyme's disease

Finally got Tabby's results today from the Lyme disease test she took last week.  And ... it's negative.  The test's aren't totally accurate, but we'll go with the "no" for right now.

Dr. H, her new doctor, had gotten copies of Tabby's lab work from her many (eight!) hospital visits this year.  He noticed that her neutrophils were high on every single test.  (Neutrophils are a type of white blood cell, which fight infections.)  The normal range should be 40-60%.  However Tabby's scores were all high - all the way up to 85%.  Dr. H said that was a red flag that her body is battling an infection/inflammation.  

Tabby had blood drawn today for more labwork.  Plus she has to give a fecal sample kit (what fun) for some "GI Health Panels."  These are 22 individual yet related tests.  The informational paper I was given listed screens for:

fungi and yeast
antibodies to gluten
digestive function markers
markers of intestinal inflammation
fecal occult blood
total SlgA
antibodies to dairy, soy, egg proteins

I think it will take about 2 weeks to get all the test results back.  (Sigh.  Wish those companies could do faster turn around times!)

In the meantime, Dr. H gave Tabby two things to begin taking daily.  One is something to mix into a drink once a day called RepairVite.  This should help her intestinal tract and lining to begin healing.   The other product is PRP Balance.  This is a spray that she will use twice a day.  It is colostrum to help modulate normal immune responses.  

She'll also continue the regime of Plexus products I have her on because she now has several hours, most days, where her stomach and chest pain is gone, and she"only" has bad joint pain and weakness.  (I have her on Slim, Ease, Nerve, ProBio 5, and BioCleanse.)

We feel positive, working with Dr. H.  But we sure wish everything could be done super fast.  It's hard to see normally energetic Tabby sitting or laying down, day after day.  Tomorrow will mark 1 month straight of her being in pain every. single. day.

We are so grateful for your prayers.

Tuesday, October 4, 2016

Calling all parents of children with Trisomy 18 or 13! Your input is wanted!

holding baby chicks is so sweet
UPDATE:  I heard again from the doctor regarding the questionnaire.  If you have not submitted your answers -  please HOLD OFF for right now.  I'll update again when it's time to send them in.  Thanks!

Yesterday morning we had a surprise outside.  One of our Black Austrolorp hens marched out of the woods with nine tiny fuzzy little chicks trailing behind her.  What?!  We weren't expecting that!

The hen, who I've since named "Mama Mia," puffed herself up extra big and fluffy as we neared her and her biddies.  She wanted us to know that she would do everything she could to protect those precious babies.

That same analogy is used in scripture, when God wants to show how He longs to protect us:  "how often I have longed to gather your children together, as a hen gathers her chicks under her wings ..."  Matthew 23:37

Mama Mia and her 9 baby chicks
Don't we feel the same way about our own children?  Even the ones that have not been born or died before birth?  Even the ones that we are told won't live?  The ones that are "special needs" and considered by many in society to be useless?  Maybe especially those children.  We mamas (and daddies) fight for those children.

And if you've had a child born with Trisomy 18 or 13, you know what a fight it is.  Just to get common healthcare for your baby can be hard!  We live in an area surrounded by highly recognized hospitals yet our Lilly could not get her heart surgery here.  We were told these surgeons believed it was "unethical" to put a child through that when they are just going to "die anyway."  (So fine - we took Lilly all the way to Florida for the surgery!)

Lilly at 16 months - our happy girl lived 17 months with full Trisomy 18
Last week I was contacted by a UNC Hospital task force (Chapel Hill, N.C.).  The man from the pediatrics unit that I talked to said they are attempting to improve their communication with families who face a diagnosis of T-13 or 18.  They recognize that these children “are staying alive longer and that the hospital needs to change their approach.”  For example - “to stop using hurtful language, whether the child is well or not.”  (Let’s wipe out the use of “incompatible with life!”)  In order to better counsel families, he e-mailed me the following questionnaire that he is hoping to receive feedback on, and asked me to share it. 

UPDATE:  I heard again from the doctor regarding the questionnaire.  If you have not submitted your answers -  please HOLD OFF for right now.  I'll update again when it's time to send them in.  Thanks!

Trisomy 13 and 18 Workgroup

Workgroup Goals:
Improve communication between caregivers and families faced with diagnosis of Trisomy 13 or 18
-    Increase consistency and accuracy of communication
-    Improve caregiver/provider understanding of management options at UNC
-    Increase sensitivity around terminology
-    Improve collaboration between family and caregivers, and among medical providers
-    Understand family’s values and set appropriate goals based on those values
-    Improve provider/caregiver understanding of family decision-making

Questions for families (feel free to answer as many questions as you wish
1.    Please tell me something about your child.
2.    Please share with me memories of the initial encounter when you learned your child had Trisomy 13 or 18.
a.    How were you told?  (Who told you? Where were you? Who was with you?)
b.    What do you remember being told? 
c.    What was the most important thing you heard? 
d.    What more do you wish you had been told? 
e.    What do you wish had not been said? 
f.    How much information were you able to hear at that first encounter?
g.    How did you feel about the way the diagnosis was communicated? (words used, setting, etc)

1.    How did you share that information with your spouse/significant other/extended family?  Is there anything that would have made that easier for you?

2.    Did you receive consistent messages about the diagnosis and prognosis from different medical providers?

3.    After knowing your child had Trisomy 13 or 18, what were your hopes for your child? 
a.    How did these hopes inform your decisions around their care?
b.    Have these hopes and expectations changed with time?

1.    Did you feel support for the decisions your family made with regards to interventions/treatments from the medical team?

2.    Did your decisions about intervention evolved over time? If so, how did they evolve?

3.    What was it like to care for a child with Trisomy 13 or 18?

4.    What was been most challenging in providing care for your child? 

5.    Could you please tell me about any barriers you encountered in caring for your child?

6.    Which aspects of caring for your child were most fulfilling?

7.    Could you please share with me any resources that were helpful for you in caring for your child?

8.    Are there ways doctors and nurses can assist families who care for a child with Trisomy 13 or 18?

9.    Is there anything you want to say to physicians in training (or nurses in training?) when interacting with a family whose child has a diagnosis of Trisomy 13 or 18?

10.    Do you have any other advice or guidance for us?

You can e-mail in your answers to the questionnaire OR discuss it by phone.  Our contact is Wayne Price, wayne_price (at    ) , 984-974-7854

If you would like me to e-mail you the questionnaire as an attachment, just let me know.  Otherwise, just copy and paste the questions.

Mr. Price seems very earnest in really wanting this information, so let’s respond and be loud, clear voices for our precious, special children!

This verse always makes me think of our special children:  

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." - Psalm 139:14

Little Firecracker on her 1st birthday - July 4, 2011

Sunday, October 2, 2016

Better late that never ... back to school time

Last week Aletha Academy was FINALLY back in swing.  ("Aletha" means "truth" in Greek and is the name of our homeschool.)  Though we had a "soft start" to get used to school again.  This week we will be back to all our regular subjects.

I am following the Ambleside Online (Charlotte Mason) curriculum for "year 3" for Hunter.  I've been homeschooling for 10 years and have been all over the place with different schooling methods and curriculum.  But a few years ago, we gave Ambleside's suggestions a shot and worked out awesome.  I used it the last year that I homeschooled Tabby, and she says that was her best year. 

Solomon will have a mix of Montessori, Charlotte Mason, and whatever else we want to work on.  I don't think you HAVE to have specific sit down learning time with a 4 year old because they are learning by doing things with you, and alone, all day.  But, Solomon LOVES learning and asks to "do school."  Hunter loves learning too, though he prefers doing his own thing.  ;)  Solomon usually listens to anything I read Hunter.  And last week he learned 3 scriptures right along with us.  (I decided to try the memory verse method by Simply Charlotte Mason and it is working wonderfully.  Click here to learn about it and download scripture cards for free.)

finally a use for my strawberry file box!

I am SO THANKFUL that Hunter is a self motivated learner.  I had initially wanted to start our school back by mid-August but that didn't happen.  Tabby was sick so much and sick almost all of September.  So much of my time was researching, caring for her, and taking her to doctors.  (We are eagerly awaiting her lyme disease tests results which should be in on Tuesday.  She is still sick but continues to have an hour to a few hours a day now where she does not have the chest/stomach pain.  Though her joint pain continues and her face is terribly broken out with acne and lumps.  These increased when she began the Plexus so we know her body is detoxing.)
Back to Hunter, he keeps himself busy every day, and usually comes downstairs with a project already in mind.  Last week he built a radio using snap circuits and miscellaneous speakers he had taken out of things.  He likes to listen to the Classical Station because he said the music helps him to feel calm.

He reads every day - from the Thomas the Train original books to electrical and motor technical manuals to other good literature.  (He's been enjoying the original Doctor Dolittle series lately.)  He watches videos on YouTube by Matthias Wandel, a man in Canada that is an engineer/wood worker, and has learned so much. (I often find myself getting drawn into the videos too.  This guy is like a grown up version of Hunter.)  So why am I sharing all this?  I'm not bragging - I'm making myself feel better that we are starting school so late!  ;)

Yes I know the sign is upside down - that's why he's smiling so big
I printed these wonderful Charlotte Mason motto signs, that I downloaded from this blog:

I need to add some quotes to our bulletin board, but for now have up my favorite Beatrix Potter quote:  "Thank goodness I was never sent to school; it would have rubbed off some of the originality."

For our work organization and so Hunter can see what we will be working on each morning, I use the Sue Patrick workbox system:

the boxes on the left were Tabby's, and I use them to store related work or books Hunter won't use that day
When Hunter finishes a subject, he can just flip the card around to show the red checkmark.  For subjects that he will do with me, I've added a "with Mama" card to the outside of the box:

I've printed several books from online that we will be using this year.  I love the idea of doing some beautiful book covers and binding.  But alas, there is that pesky time restraint crippled further by my perfectionistic ideals.  So for binding I decided I would laminate the cover and backpage, hole punch the sides, and use book rings to hold them together.  I can always redo them "more perfectly" one day, but for now I am pleased and they are working nicely.

3 book rings on this Marco Polo book I downloaded and printed
Finally, I'll leave you with some silly Solomon pictures.  He thinks it is so fun to be silly for the camera and asks me to take lots of pictures:

"But you must continue in the things which you have learned and been assured of, knowing from whom you have learned them,  and that from childhood you have known the Holy Scriptures, which are able to make you wise for salvation through faith which is in Christ Jesus." - 1 Timothy 3:14-15